Apparently I made an impression with Neurology...

[SBO]

at my last visit. The resident (I go to the Epilepsy Clinic at a large University Hospital), I saw last contacted me the other day about being a part of a presentation she will make in September. During the follow-up phone call, she said she'd really been studying OT , found out how rare it is, and wanted to present me and my case, not just at any meeting--but at Neurology Grand Rounds.

I think this is a *huge* step forward. Is there anything you all would like me to say as a group with this condition? It may be a really golden opportunity to speak out!

(And at the last visit I was prescribed Klonopin in addition to the depakote I take for the epilepsy. I take it when needed, for the most part, and it seems to work pretty well without much in the way of side effects.)

So, at the moment, things are going pretty well. Hope they are for you, too!

SBO

[Dwight Kraai]

Hello SBO:
It sure is good news that you re getting some attention. Can you tell us more about where this clinic is? One question I would ask of the neurologist is how many OT patients does he/she have. Also how many OT patients does the clinic have. If the neurologist has several patients you might also ask the neurologist if he/she would write up a summary of thier findings.

Thanks for your posting and I am sure that you will be keeping us informed.

Dwight Kraai

[SBO]

Hello SBO:
It sure is good news that you re getting some attention. Can you tell us more about where this clinic is? One question I would ask of the neurologist is how many OT patients does he/she have. Also how many OT patients does the clinic have. If the neurologist has several patients you might also ask the neurologist if he/she would write up a summary of thier findings.

Thanks for your posting and I am sure that you will be keeping us informed.

Dwight Kraai

Hello, Dwight!

I work for the University of Texas Medical Branch in Galveston , Texas, about an hour south of Houston. And because I have insurance through them, and it is convenient, I am seen yearly in the Neurology Clinic's special clinic time for epilepsy patients.

I believe--gauging from the reaction of the doctors I've seen since May--none of them have ever come across OT in person--hence the reason why I've been asked to be the subject. On the other hand, one of the faculty supposedly knows quite a bit about tremor disorders, and I am anxious to meet him.

Quite coincidentally, while working with a patron who practices at the Cleveland Clinic--I was given the name of his colleague who is supposed to be the leading expert there in tremor disorders.

The Cleveland Clinic ranks incredibly high different areas of treatments--one of them being epilepsy. Strangely enough, I consider my epilepsy "mild." In the 7.5 years since I was diagnosed, I've only had 4 seizures and two of those was because my medication had been switched and I wasn't getting what I needed. I've even been backed off that med, in the hopes that that would stem the tremor--since tremor can be caused by what I'm taking! It really seems like you can't win

(I wonder what diagnosis they finally gave that Chief Justice and whether he will have to be on medication. I was always told two strikes and you're out as far as epilepsy is concerned. But with the drugs today, he should have no problems carrying on his job at all.)

That and the klonopin seem to have helped. I can't say I'm tremor free, but there are more good days than bad!

I will ask your questions on September 5--wish me luck!

Thanks for responding,

SBO

[franann50]

WOW!! What a great opportunity for you!!! I was told by my Neurologist that he has only had 1 other patient with OT!
I only saw him once and he diagnosed it right away. I had seen 2 other Neurologists an d neither of them knew what it was. one said it was just Neuropathy from the diabetes. WRONG!!!!
PLease let us know any info you gain !!
IF I think of some ?? before you go, I will post again!
Thanks for representing all of us!
Hugs,
Fran

[Lake of the Woods]

Very pleased to hear that our condition is going to be made aware of to Neurologists. I travelled to the Mayo Clinic in Rochester last year where I received my diagnosis. At the time they were doing research on OT and it is still ongoing - there are 3 neurologists there who are very interested in this problem. The funding they have is small but I talked to one of them a few weeks ago and the research is still proceeding...slowly, he said. You might want to mention this to the doctors you are seeing. I keep in touch with one of these doctors about every 4 months.

Thank you also for posting your location - I am trying to get the message across to all people who register that if they list their location, then possibly we could meet face to face with someone with our condition - it can only lead to better things - ideas, suggestions, support etc.

[SBO]

Dear "Lake"

Where is Kenora--I have a very good friend in Hamilton, outside of Toronto. It's a pretty small world!

I am glad to hear that there are folks at the Mayo working on this, apparently the Cleveland Clinic is another good option for treatment. I am reserving those as options as I am so far south. There is supposed to be one doctor here that knows much about tremor--but I don't think everyone in Neurology has had the chance to see OT "in action." They'll get their chance next week

Keep fighting the good fight!

SBO